Discussion Forums > Thalassemia Major

19 weeks pregnant and found out today that baby has beta thalassemia major

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Cari:
Hello,

I am 28 yrs old and 19 weeks pregnant with my first child.  My husband and i were both aware that we had thalassemia minor  5 years ago.  We knew that we were going to deal with test results at some point but the actual shock of finding out is something i really never prepared myself for.

It took us a few years of doctors telling us we could not even get pregnant naturally due to other complications before we finally had the shock of our lives in January.  It was a blessing for it to happen for us and we embraced it...even though we knew what was to come. 

I found out the baby has major this morning.  All i have done is cry. I have all these thoughts  are running through my mind.  I need to speak to someone who has gone through this.  My husband and my family have been really supportive but we are all trying to figure out what kind of life our child is going to live.  We are trying to figure out how to deal with this reality.  We are trying to figure out if it is selfish to put our child through so much...

Has anyone else found out they have a child with thalassemia major during an amnio? How can i deal with this?   Please help us. 

Charishma

Andy Battaglia:
Hi Charishma,

You have found what is probably the best site on the internet regarding thalassemia. The message you will find here is a fairly positive one and you will learn that the outlook for thalassemia patients has changed drastically in recent years. Thalassemia was formerly classified as a fatal blood disorder. In the US today, thalassemia is now listed as a chronic manageable condition. For starters I will request you read some posts on this site, so you can get a better understanding of the current outlook and treatment for thalassemics is today. I would also ask that you take a look in the gallery and under member photos, take a look especially at the pictures of little A playing hockey. As a ten year old, he is the star player of his hockey team. There are also two thal major women that are members of this group, one in her late 30's and the other 40, who will soon be giving birth. For the 40 year old, it will be her second child. I know they will both tell you that they are very happy their parents decided to give birth to them. In this group we try to stay very current on what is happening in new developments for treating thal and in some ways, we are the leaders in showing parents and patients how to deal with thalassemia.

Please read the posts at http://www.thalassemiapatientsandfriends.com/index.php?topic=2751.msg26480#msg26480  and
http://www.thalassemiapatientsandfriends.com/index.php?topic=1575.msg13006#msg13006

If you do random searches on the net, you will often come across outdated and inaccurate information about thalassemia and this will scare you. Yes, there are many problems that thal patients confront and treatment is a constant, but a patient in today's world can expect a long fruitful life as long as there is full compliance with treatment. With the introduction of oral iron chelators, treatment has become much easier to comply with, and much less intrusive. There are many reasons to be hopeful, as new developments in the approach to treatment are coming fast and some are in trials at this moment. We have many members with young children and they are finding that dealing with thal in their children is not the nightmare they thought it might be and they could not love their kids more than they do. I don't know anyone who has said they wished they hadn't had their children. You should also be aware that the US has some of the best thalassemia centers on earth and excellent treatment programs are available.

Your decisions are for you and your husband to make and all should respect your decisions. Whatever happens, you will have our support.

I expect some of the parents in our group will have more to add.

Sharmin:
Dear Charishma,

The information that you have received this morning must be overwhelming for you right now.  After reading your post, I looked at my 10 year old son (lil A) and this is what I saw as I tucked him in to his bed.  A very healthy looking little boy, who did not want to go to bed yet because he was having too much fun - and he does not want the day to end.  His best friend spent the day with us and they played in the park, laughed and teased my daughter and her friend all weekend.  Lil A loves his life very much - he has such a thirst for knowledge, and a gleam of curiosity in his eye - he lives and savors every moment of every day.  My prayers are that he is always happy and healthy.   He plays ice hockey, basketball, soccer, he was chosen as academic student of the year in his entire school last year - and most importantly he love to laugh and tell jokes.  Lil A is very much like most other thal major children that I know - they are very healthy and normal - if their disease is well managed.  Other children on this website - lil Z, Ahmad, and others - are also very bright, intelligent and wonderful.

I also have adult friends who have thal major, one a 41 year old woman who is a mother of 3, and another 27 year old man who is the father of a beautiful little girl.  They are both educated and have great careers. 

Regardless of what decision you make, we are here to support you.  If you do decide to continue with your pregnancy please don't feel selfish, because children with thalassemia can live very normal and healthy lives.  I will say that having a child with thalassemia is a great responsibility.  Here are a few things that will keep your child healthy:

1) Be sure to be seen at a comprehensive thalassemia center

2) have genotype and phenotype testing done before your child is transfused.

3) Be sure that your child's hemoglobin is kept above 95

4) Be sure to begin chelating your child early so that iron does not accumulate in the organs

5) Have your child eat a very balanced diet and supplement with vitamins that we can tell you about on this site

6) Ensure that your child gets regular exercise

7) Help develop your child's self esteem and understanding of thalassemia - so that he/she can take care of him/herself. 

There is every chance that your child can live a full , healthy and happy life. 

Regardless of what decision you make about your pregnancy, we understand that this is a very difficult decision.  Being 19 weeks, I know that you have very little time to firm up your decision.  We support you in whatever you decide and we will be here for you.  I hope that this information is helpful to you.

God Bless,
Sharmin

Zaini:
Hello Charishma, :hugfriend

Welcome on the forum,first of all,rest be assured that whatever deceision you and your family takes,we'll always be here to support you.

I have an eight years old daughter,Little Z,the one Sharmin referred to,you can see her pictures in the gallery,when she was diagnosed,which was when she was three years old,i remember i kept thinking how selfish i am,despite being anemic whole my life why didn't i investigate further what was wrong with me,neither my husband nor me knew we were thal minors until our daughter was diagnosed.But now when i look at her,i don't see anything abnormal about her,she is an intelligent and bright child,she won first position in her annual sports day at her school twice in a row.

As Andy said,treatment for thalassemia has drastically change since last few years,its not a fatal blood disorder anymore,especially for those who live in countries where medical facilities are widely and easily available.

If your child comes in this world,what you can do is just be there for him/her,and be there with a positive perspective of life,with today's treatment a thal major can live a fulfilled and happy life,at least i am looking forward with a positive approach for my daughter,i hope that one day she'll have a successful career,will marry and have kids,and i live in a country where medical facilities are not that easy and cheap.

One of our thal majors member who is in her 30s,Cherianne,has a quote written as her signature,and i love it "Thalassemia is not a burden,its a lifestyle ."

Again whatever decision you'll take we'll respect it,please keep us updated.

Zaini.

Manal:
Hello Charishma and welcome to the site,

I know how you feel right now cause every parent in this group had this moment before. I just want you to know that having a thal major child is a big responsibility and a challenging thing, but with love, care and good treatment you don't have any reason for not having a normal life. It is difficult but managable. In order to decide, you have to learn and know much about thalassemia cause knowledge is power as we always say. Read as much as you can and you will find in this site all the infomation you will need about the management, the challenges and the life style.

I believe that your baby will be very normal and able to do anything that other children can do.  Regular transfusions, chelation and growth monitering will keep your child healthy and normal like any children of his age.  In fact, many parents say that by time they forget that their child has thalassemia other than when the have to go to the hospital for transfusions.  

Thalassemia will not prevent you from enjoying anything that any other parent can enjoy with their children.  Thalassemia children can do anything.. walk, talk, play, get educated, go to college, get married, have children and live a normal life span. They even become grand parents but again this is all because of tremondous care.

I know that this will not ease your pain and anxiety, but by time I hope that it helps. If you decide to continue with your pregnancy one important thing to know it to ''normalize'' your attitude towards your child inspite of this disorder because our children are the mirror of our thoughts and beliefs. Your child will amaze you when you have faith in him/her. If you believe and work that he/she will live a healthy and normal life,  this will happen. It is so hard and challenging but it can be done

Wishing you all the best - and we are all here to guide you in  raising a healthy thalassemia child together.  Please keep updating and be sure that we are here for you in whatever decesion you take

manal

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